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Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected] UK Narcolepsy Catnap Newsletter of Narcolepsy UK October 2012 2012 – the year we brought meetings closer to members THE YEAR 2012 is going to be remembered for many things in years to come – the success of the Olympics and Paralympics in London, the Queen’s Golden Jubilee celebrations and a sporting summer to beat all others thanks to medal winning performances and the drama of the Ryder Cup. However, 2012 was when we brought Narcolepsy UK closer to you, our members. As requested by members who found travel costs were making attending conferences expen- sive, 2012 saw Narcolepsy UK take the conference meetings around the country. Starting in Edinburgh in April and then moving to Leicester in June, we ended the conference season in Bris- tol last month. Aimed specifically at families and younger people with narcolepsy, September 15 saw over 50 families and individuals arrive in Bristol to spend time with each other and the trustees and to hear the latest de- velopments from two of the leading medical specialists on narcolepsy. Adam Zeman (pictured below) is professor of Cogni- tive and Behavioural Neurology at the Peninsula Medical School in Exeter, as well as hav- ing a busy NHS practice which includes many people with narcolepsy in the south west. His talk focused on the differ- ences between a sleep special- ist and a neurologist, as well as how a neurologist looks at narcolepsy. As there are more neurolo- gists dealing with narcolepsy than sleep specialists it was very interesting to hear about the similarities and differences in approach. In addition Professor Zeman gave an overview of medication and ended with a discussion on xyrem and how it remained an under-used drug that can produce good results. Dr Rebecca Martyn is a clinical psychologist working with the children’s neuro- disability and paediatric team at Evalina’s Children Hospital at St Thomas’ in London. The sleep group there is continued on page 5
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Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected] Modafinil can react in many different ways with contraceptive

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Page 1: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

UK Narcolepsy

CatnapNewsletter of Narcolepsy UK

October 2012

2012 – the year we brought meetings closer to membersTHE YEAR 2012 is going to be remembered for many things in years to come – the success of the Olympics and Paralympics in London, the Queen’s Golden Jubilee celebrations and a sporting summer to beat all others thanks to medal winning performances and the drama of the Ryder Cup.

However, 2012 was when we brought Narcolepsy UK closer to you, our members. As requested by members who found travel costs were making attending conferences expen-sive, 2012 saw Narcolepsy UK take the conference meetings around the country.

Starting in Edinburgh in April and then moving to Leicester in June, we ended the conference season in Bris-tol last month.

Aimed specifically at families and younger people with narcolepsy, September 15 saw over 50 families and

individuals arrive in Bristol to spend time with each other and the trustees and to hear the latest de-velopments from two of the leading medical specialists on narcolepsy.

Adam Zeman

(pictured below) is professor of Cogni-tive and Behavioural Neurology at the Peninsula Medical

School in Exeter, as well as hav-ing a busy NHS

practice which includes many

people with narcolepsy in the south west.

His talk focused on the differ-ences between a sleep special-ist and a neurologist, as well as how a neurologist looks at narcolepsy.

As there are more neurolo-gists dealing with narcolepsy than sleep specialists it was very interesting to hear about the similarities and differences in approach.

In addition Professor Zeman gave an overview of medication and ended with a discussion on xyrem and how it remained an under-used drug that can produce good results.

Dr Rebecca Martyn is a clinical psychologist working with the children’s neuro-disability and paediatric team at Evalina’s Children Hospital at St Thomas’ in London.

The sleep group there is continued on page 5

Page 2: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

Spread festive joy and message on narcolepsyWE ARE once again offering Christmas cards for members to buy after the success of last year’s set of festive cards.

This is an opportunity not only to support the charity but to spread the word about nar-colepsy to a wider public.

The new design of Christmas cards were first offered for sale at the Bristol conference last month and we are now offering these to all members to purchase.

There are four designs and we are offering a pack of six with varied designs for £5 plus £2.95 postage for any reasonable amount.

We still have stocks of last year’s cards where a pack of 12 (three of each design) is

available for £10. We can also offer eight of the new design

and eight of last year’s design for just £10 – a considerable saving on buying

individual packsTo order your cards please

contact the Narcolepsy UK office by phone, e-mail or post using the details at the bottom of

this page.Any cheque should be made payable to Narcolepsy UK and credit and debit card payments can now be made

via the Narcolepsy UK website.Cards will be posted within seven

days of receiving the order and the last date for postage to make sure you have your cards for Christmas is December 5.

Narcolepsy UKFounder: Dorothy Hand

Registered charity number: 1144342Company Number: 7790071Office address: PO Box 13842, Penicuik, EH26 8WXTelephone number: 0845 4500 394 (local call rate applies)E-mail address:[email protected] address:www.narcolepsy.org.uk

Management committeeChairman: Bill HarrisVice Chairman: Ed CoatesSecretary: John CherryTreasurer: Nicola RuleCommittee members: Graeme Moir (Catnap editor), Zoe Shardlow Jenny Taylor, Tim Kavanagh, Hugh Davies-Webb, Tom Bamford.

Chief executive: John CherryFundraising Manager: Clare BaldwinOperations: MargaretRoxburgh

Medical advisers: Prof AZeman, Prof A Williams, Dr JM ShneersonScentific adviser: Dr Chris Jones

Catnap (ISSN 1357-8944) is published by Narcolepsy UK and is sent to all members. Extracts from Catnap may only be reproduced with the permission of the editor.

Disclaimer: While every effort is made to verify the informa-tion in Catnap, Narcolepsy UK, its management committee and the editor do not accept respon-sibility for any inaccuracies that may occur. The information given should not be taken as a substitute for medical or other professional advice.

If you have any stories you would like to see in Catnap or any suggestions for future edi-tions, please contact the editor using the details at the bottom of this page.

Send us your stories or Catnap ideasGOT A story you would like us to publish in Catnap? Or is their a subject you feel we should cover in a future edition?

We always welcome written contributions or ideas for stories from members so feel free

to contact us – and hopefully you will get to see your story or idea in a future edition.

To get in contact with us, simply use the contact information printed at the bottom of this page.

Page 3: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

Modafinil can react in many different ways with contraceptive pillsIT HAS been some time since we covered the subject of modafinil and the contraceptive pill in Catnap but as we have had several recent requests for information it seems a good time to repeat the details we gave previously about modafinil and how it reacts with the pill.

If you are on modafinil (provig-il) you will probably know that the effectiveness of Oestrogen based pills and duel pills are reduced and you should not take them for birth control purposes.

Many people are then put on the mini pill or POP (Progester-one only pill) pill. All hormonal birth control is affected by modafinil not just Oestrogen pills. Old POP pills, which have an average four per cent failure rate anyway, will have that increased if you take it with modafinil.

The UK medical eligibility criteria for con-traceptive use (UKMEC) give the following recommendations for women using modafinil and taking the pill.

“The risk of using combined hormonal con-

traception, Oestrogen or Progesterone only pill or etonogestrel-only implant, outweigh the benefits of using this method.

“Other contraceptive options such as depot medroxyprogesterone acetate,

norethistone enanthate,

copper intrauter-ine devices, levonorgestal releasing intrauterine devices and the barrier method should be considered.”

If you are on modafinil it could cause prob-lems with your birth control medication if you use a combined or Oestrogen or Progesterone only pill. POP pills are not recommended by

the UKMEC.If you want protection against pregnancy

and don’t want to use the barrier method or coil you are left with the option of either an injection of DPMA such as Norplant, an injection of NSE such as Noristerat, or using levonorgestal either as an IUD or the so-called morning after pill.

It is true that higher dose Oestrogen or Progesterone only pills will

have better protection but once again they will not be as pro-tective if you are on modafinil.It is impossible to say, on an

individual basis, how less ef-fective the pill will be if you are taking modafinil, which triggers

a liver enzyme that speeds up metabolism of certain hormones including those used in the pill.The level of metabolism will

depend on the dose of modafinil and your liver.

If you are worried ask your doctor to ar-range a hormone profile to find out just how much at risk you might be.

IT’S ONE of the biggest success stories of recent years for Narcolepsy UK but the benefits helpline has become so popular we are extending its operating hours.

The charity offers help and support throughout the year to members and for many the first person they speak to is

Margaret, who works in the charity office in Scotland.

Earlier this year we started a timed ben-efits helpline which operates Tuesday and Thursday evenings from 5-7pm.

The trustees of the charity have decided to run this service for an extra hour on

both evenings so the helpline will now be available until 8pm.

The main activity of the line is to support members in benefit claims but if you have another problem and need to speak to someone do feel free to contact the helpline on 0845 4500 394.

Hours of operation for helpline to be extended

FOR THE first time ever the International Paediatric Sleep Association is holding its world conference in Britain.

It will be held in Manchester from Decem-ber 5-7 and Professor Paul Gringras and Dr Catherine Hill have arranged a “public facing session” for families of children with narco-lepsy and those under 16 with the condition to meet some world leading researchers.

These experts will include Dr Emmanuel Mignot and Mali Einen, who both spoke at our 30th anniversary conference in Cam-

bridge last year.The plan is to start at 10.30am and go

through until at least 2pm. There will also be the opportunity to get involved in registering for research projects if you are interested.

There will also be the opportunity for discussions with the professionals during a question and answer session before lunch.

The event will take place at the Manchester Central Convention Complex on Wednesday December 5, and it starts at 10.30am.

The charity is looking to find suitable

accommodation at discounted prices for fami-lies who want to travel up the night before - further details will be given on the website or if you would like to contact Margaret using the details at the bottom of the page we shall pass on information as soon as we have it.

Children can attend the conference for free but adults will be expected to pay a £20 attendance fee. All the details have yet to be worked out and the charity is looking into offering some sort of subsidy for the event. Check our website for updates regularly.

Chance to see world’s leading sleep experts

Page 4: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

OUR MAGNIFICENT fundrais-ers who have faced all manner of challenges for Narcolepsy UK are an inspiration.

I can’t thank you enough for not only raising much-needed funds for the charity, but raising our profile as well.

This year we have seen gutsy folk running marathons, walking long-distance trails and crossing peaks because they want to thank us for being there for them and their families.

It‘s really easy to fundraise via the Virgin Money Giving web-site. Your supporters can sponsor you online, and a running total appears to boost your spirits.

Of course, a grueling challenge may not be for you, but there are so many ways you can help Narcolepsy UK.

We receive no government funding so we rely solely on donations to keep running.

There are estimated to be around 31,000 narco-leptics in the UK, with 25,000

undiagnosed, according to NHS statistics.

The average time for diagnosis is 10 to 14 years (taken from our 2010 survey of active support-ers). Thousands upon thousands of people are using our service. In the past 12 months our website has had 42,000 visits.

It costs a great deal of money to run your charity, providing the website, helplines, advocacy, leaflets, Catnaps, conferences and local networking groups.

Every penny helps, and if you would like to hold a small fundraising event, take a look

on our website under ‘Fundraising’ for 50

Ways To Raise £50.

Hopefully you will find some-thing to inspire you. How about hosting a winter-soup lunch for 10 people and charging £5 each; organise a golf competition for 10 friends and charge them £5 each; make jam/marmalade and sell it to friends? We can provide you with a Narcolepsy UK T-shirt and support.

Of course, regular giving is very important to the charity, and provides us with a steady income. We have supporters who pledge £10 a month, for which we are very grateful, or an annual sum. This can be set up through our administrator Margaret, or via Virgin Money Giving.

One-off donations can be made either to the charity or through Virgin, and I must mention lega-cies, which enable us to grow our work in so many ways.

If you would like to discuss the possibility of making a

bequest in the future, please do give

our director John Cherry a call, and he will be happy to talk it through with you.

As Narcolepsy UK’s fundrais-ing manager, I am making hun-dreds of funding applications to trusts and foundations each year, asking them to make a donation towards our work.

They really want to hear in people’s own words how they appreciate our service. So if you would like to e-mail me with a couple of sentences on how Narcolepsy UK has helped you, that would be wonderful.

My e-mail address is [email protected]

We will soon be uploading a very short questionnaire to the website because funders like to know how the charity has improved lives.

Your answers to the six ques-tions would help prove that we are needed – and hope-fully secure more funding. It just involves ticking boxes, it’s very quick.

So please, give fundraising a thought, you really could make a difference.

Well done on fundraising so far but we always need to keep bringing in more

Narcolepsy UK’s fundraising manager Clare Baldwin pays tribute to those who

have raised funds for the charity andexplains how you can make a difference to

sufferers of the condition in the future

Page 5: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

Narcolepsy UK chairman Bill Harris (left) and trustee Ed Coates (right) speaking at Bristol meeting.

Meetings taken on tour for membersl continued from front pageone of the largest children’s groups in the

country with 60 children aged from two to 16 working with the team at any one time.

Rebecca explained how the team ad-dressed the needs of referrers and children and then explained about the investigations carried out to get a definitive care agree-ment.

She also talked about the difficulties in medication for children and explained that while modafinil was no longer recommend-ed for under-18s it could still be prescribed by a consultant.

The unit was experiencing good results with the slow release version of methylphe-

nidate, which 80 per cent of under 18 users found effective and successful.

Ed Coates, a trustee of the charity, talked about the challenges and the psychological experiences of having narcolepsy as a child and being part of a family that has a child with narcolepsy in it.

This was a very interactive session with many members getting involved. It went through school problems as well as dealing with siblings and stressed the importance of early intervention and good sleep hygiene and drug regimes in order to mini-mise many of the emotional and vocational problems seen in adults with narcolepsy.

Narcolepsy UK last visited Bristol in

2006, visiting the same venue at Armada House.

In 2006 researchers were struggling to understand what orexin/hypoctetin did and how it inter-reacted with the body.

We were just starting to see xyrem come on to the market in this country and the belief that narcolepsy was an auto-immune disease was starting to take shape.

It is amazing how far we have come in six years but equally how far we have to go to deliver care and support for all people with narcolepsy.

While the conferences might be over for another year the work of providing sup-port to our members continues.

Page 6: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

IT CAN be observed at any narcolepsy meet-ing that on average people with narcolepsy tend to be heavier than the norm.

Worse still, once someone with narcolepsy has put weight on, they then find it more dif-ficult to take it off again.

There are lots of reasons for this, includ-ing lack or orexin, cravings for sweet foods and the difficulty of exercise with cataplexy.

However, last month the Canadian Obesity Network has found another reason – lack of sleep. Writing in the Canadian Medical Asso-ciation journal, Doctors Chaput and Tremblay report that adequate sleep is an important part of weight loss and should be added to the mix of diet and exercise.

There is nothing new in this. Back in 2010 a report was issued by the University of Chicago that suggested this was the case. This latest report, using a wider group, simply confirms the data already presented.

In the latest exercise healthy but over-weight volunteers were studied for two 14 day periods in a laboratory – once with 8.5 hours set aside for sleep and once with only 5.5 hours for sleep.

They spent their waking hours on usual home or office type activities and they were allowed 1,450 calories a day. During each two week session the volunteers lost an average of 6.5 pounds but the interesting thing was what

sort of weight loss it was.Those who were allowed to sleep 8.5

hours lost 3.1 pounds of fat and 3.3 pounds of fat free mass, mostly protein. Those sleeping 5.5 hours lost a lot less fat, only 1.3 pounds, but their non fat loss increased to 5.3 pounds of protein.

The study points out that getting adequate levels of sleep reduces the feeling of hunger and while you might feel that being up after five hours of sleep would increase calorie use, this report shows that those who get only five hours of sleep a night compensate by doing less and resting more during the following day – so calorie use remained about the same.

Then it was found that leptin, a hormone which effects body weight and is secreted by fat cells, reduces. Leptin worked directly on the hypothalamus signalling when a short-age of fat is in the body – decreased leptin tells the body there is a calorie shortage and promotes hunger.

The other important thing found from the study was the increase in the hormone ghre-lin. This increased by a good 12 per cent in those not allowed to sleep and higher ghrelin levels have been shown to reduce energy expenditure, stimulate hunger and promote retention of fat.

Finally increased ghrelin increases the lev-el of glucose production. This is what could

technically be called a ‘double whammy’ – leptin saying no fat is here we need more food and ghrelin agreeing and saying we need more fat and food and keep that glucose go-ing while you are at it.

We know that lack of orexin/hypocretin changes appetite control and how we store fat – we have now discovered that by not getting enough sleep that can be magnified.

If we don’t sleep for between six and eight hours at a time several chemical compounds can convince the body that we are hungry, even if we are not.

They can then convince the body to pro-duce fat and burn protein rather than reduce fat content. They can tell the body to push out glucose, which in turn makes the body produce more insulin.

For those people who wake after a couple of hours sleep and find they must eat some-thing sweet and quickly, this could be one of the answers – an increase in insulin produc-tion to metabolise glucose that might not be present in the levels your body thinks it is.

As well as calorie restriction and increased exercise, the Canadian Obesity Network has now included adequate sleep in its new set of obesity tools for physicians.

We hope other countries will take note of this and also recognise how sleep can affect weight.

Study shows a lack of sleep can push up weight

The UK has reciprocal health care arrange-ments with many countries but this does not mean you will get free health care while on holiday in these countries – far from it.

Reciprocal arrangements means that a citizen of the UK travelling to say Australia, Canada or New Zealand will be entitled to the same level of support as a citizen of that country at home. So for a Kiwi travelling to the UK, they are covered by the NHS, free at the point of delivery.

For those in the UK visiting New Zealand they have to apply for B5 reciprocal arrange-ments procedure for healthcare (the New Zealand embassy has all the information or check out www.medsafe.govt.nz

With this B5 you will be able to obtain an NHI number (it takes about eight weeks) which will allow you the same level of sup-port as if you were born and bred in NZ.

You will be able to use this for prescrip-tions for NZ$3 at a pharmacy – provided that the drug in question is on the pharma list.

Most narcolepsy medication isn’t so you have to pay a premium over prescription fees. For example, Modafinil will cost NZ$147 a month just as it would for a native New Zea-lander, so this is a reciprocal arrangement.

The same thing applies in Australia, Canada and about 20 other countries, so do remember reciprocal does not mean free.

No reciprocal arrangements exist between the UK and USA. Europe? Again you have the ‘green card’ or EU1 which guarantees treatment at the same level as a national of the EU country you are visiting.

In Europe most countries offer a mix of private insurance and national cover. This means between 50 per cent and 80 per cent of your medical bill will be covered by the state

and the rest you have to pay.Most people take out an additional health

insurance to cover the difference but if you don’t have it, even with your green card, you will still be expected to pay.

As an extreme, let’s look at getting xyrem in France. It costs under prescription between €189 to €200 a month to get the prescription.

This is a reciprocal arrangement as this is what a French national would be charged so as you can see, it isn’t free.

Then of course, even in Europe, some drugs you use here just are not available or if they are it’s under a different strength and name. Many drugs are only available at spe-cific chemists and in some cases pharmacies attached to main hospitals.

Always check before you go to a country that a source of the drugs you need is avail-able to you.

Free healthcare and prescriptions not always reciprocated in foreign lands

Page 7: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

ONE OF the regular points made at Indi-vidual Funding Requests, something people who live in England have to go through to get xyrem, is the belief that no clinical data exists on the value of xyrem that hasn’t been funded by a drug company.

This is absolute nonsense as there are over 40 studies in respected journals that confirm that xyrem works well on people with narco-lepsy and cataplexy.

This month the Sleep Medicine Review will be publishing something called a meta-analysis by some of the leading names in Europe, including Yves Dauvillers and Rafael Burto, on the effectiveness of xyrem.

Xyrem has probably been through more tests and had more papers written about it than any other narcolepsy medication so it is good to see all that information put in one well constructed document.

This is what a meta-study is – it takes all the reviews of the literature on a medicine

and provides an analysis of what they say.In this case they have looked at cataplexy

attacks, daytime sleepiness, quality of life, sleep paralysis and hypnagogic hallucina-tions, as well as viewing before and after sleep latency from MSLT and polysomnog-raphy.

The trials looked at 1,154 patients – 771 with narcolepsy in xyrem groups and 383 in placebo groups.

While the report relates to the compound name, gamma-hydroxybutyrate or GHB, make no mistake, they are talking about xyrem – which is the trade name.

The analysis across a number of trials shows that xyrem reduces cataplexy both on a daily and weekly basis by up to 95 per cent. Hypnagogic hallucinations and sleep paraly-sis was reduced by 70 per cent and stage three and four sleep increased by 60 per cent.

Patients on the drug saw not only their quality of life increase but their clinical global

impression change score increase.The only area that did not show a huge improvement (as in above 50 per cent) was REM sleep and stages one and two sleep.

The report also suggests that total sleep time is not increased, which certainly is not what most of the people we know who take xyrem would say!

The final point they make is that EDS is also decreased and once again we have found that most of the people on xyrem have not seen that much change to EDS.

The meta-analysis concludes by saying the various reports viewed demonstrate the ef-fectiveness of GHB (xyrem) in treating major, clinically relevant narcolepsy symptoms and sleep architecture abnormalities.

We agree, and must reflect on the fact that while 40,000 people worldwide now use xy-rem as a treatment for narcolepsy, and do so safely and successfully, the UK still has less than 200 people using this life changing drug.

Plenty of evidence shows xyrem can help patients

AT NARCOLEPSY UK we often get asked for help on what drugs can be taken into a certain country.

This is a very difficult question to answer and we do welcome information from all members who have specific knowledge.

The idea is to put a section of information online before next year’s holiday rush.

From the information we have gained we can see some specific problems – the first is legally taking drugs out of the UK.

If you are going on a gap year or a long holiday of over three months and you are tak-ing medication with you, you need a licence from the Home Office.

First you need to see if the drug is on the list (and most drugs used by people with nar-colepsy are) and if they are you must apply for an export licence.

The form is quite straight forward and will need a signature from your consultant and/or GP. You can download the licence form at www.homeoffice.gov.uk/drugs/licensing/personal. It says they will get back to you within 10 days – they will but usually with questions. Expect a wait of five to six weeks minimum to get your licence.

While this licence is not recognised in the USA, Australia or New Zealand it does

look official and is stamped and is well worth taking with you to show. The real need of the licence is to take your medication out of the UK without breaking export laws.

Second problem – can you get the amount of medication you need to cover a long term break from the UK?

In April the NHS made some changes to the prescribing procedure. Most, but not all, GPs will only be allowed to prescribe one month’s supply of medication and you may (probably will) find it difficult to get more than that on an NHS prescription.

Your consultant can issue you with a private prescription for two months but that would cost just under £1,600 for xyrem.

Do check with your GP before you make arrangements to see what they can prescribe before you book your holiday – you might find unexpected costs appearing.

When travelling with medication make sure the medication is available for sale in the country you are going to.

If it is the chances are it will be easier for you to import it for your own use.

Always carry with you a copy of the pre-scription and a letter from your consultant or GP on letter headed note paper that includes fax, phone and e-mail addresses where they

might be contacted.Have the Home Office certificate to hand

and if you ask we can write a letter explain-ing what narcolepsy is, on letter headed note paper of course.

If you can find a web page saying this country allows this in, copy it and add it to the paperwork. Always disclose medication of over one month’s supply on documenta-tion and insure that your medication is kept in your hand luggage and is sealed and unused.

Which just gives you one more problem if you are travelling with xyrem – you will need to get authority if you wish to take over 100ml of liquid medication on board an aircraft – even if you have a Home Office licence.

You will need to get approval from the airline you are flying with and the airport you are flying from, including overseas airports if you are flying back with liquid medication.

Once again you will need a letter from your GP or consultant and a copy of the pre-scription and then, we are told, you should be allowed to travel with your xyrem.l To let us know any details you have on

this issue for specific countries or airports and airlines, please contact us using the informa-tion at the bottom of this page.

Think before you travel if you want to take medication with you

Page 8: Catnap - Narcolepsy UK · Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: info@narcolepsy.org.uk Modafinil can react in many different ways with contraceptive

Post: PO Box 13842, Penicuik, EH26 8WX Phone: 0845 4500 394 e-mail: [email protected]

Why it might not be wise to dive straight inWE ALWAYS say that if you have narco-lepsy you should be allowed to do whatever you want to do providing the narcolepsy was controlled and you are not putting yourself or anyone else in danger.

It was interesting to get a request for help from a member recently who wanted to undertake a diving course and wasn’t sure that she could.

We contacted the governing body of scuba diving in Britain to ask about if they would allow an individual with narcolepsy to undertake the basic PADI course. The answers were very interesting.

The first thing to realise is, if you are going to take a PADI diving course some-where reasonable you will be asked to get a certificate from your doctor explaining your medical background.

Certain countries and dive schools don’t ask for this but certainly if you are undergoing training in the UK, Europe or the USA you will be asked to provide this.

Next point to make is that several countries and states in North America have imposed diving restrictions on people with narcolepsy and even where narcolepsy is not mentioned specifically you will not be able to dive under certain conditions.

These include if you are a regular taker of prescription medication or are receiving any regular medical care.

If you have blackouts or seizures or take medication to prevent these you would not be able to dive.

In some cases if you have experienced a narcolepsy free period of time (at least a year) you might be allowed to dive but again that depends on the location.

The next thing to point out is, if you go to an area where they don’t ask for a medical history and you decide to dive you could be placing yourself in danger.

Several drugs people with narcolepsy regularly use can change their effects when diving, while others can change the way your metabolism reacts.

Drugs that increase the metabolic rate – as in most stimulants – can cause an increase in the risk of oxygen toxicity, though this has mainly been seen in divers who use nitrox. We had the word “mainly” underlined.

We were surprised to see that Ritalin is a bad drug to be on when diving. It can create joint pains, dizziness and rapid palpitations of the heart.

Dexedrine can cause increased meta-bolic rate so that isn’t advised with diving. If you have cataplexy and take drugs for it, most will be some sort of anti-depressant and most countries don’t allow diving if you are on anti-depressants.

Some studies have shown that diving

with Clomipramine or Prozac can increase its strength.

Then we come to xyrem. Most countries don’t allow divers to dive with GHB in their system. It can decrease alertness and change the way you sense things.

While GHB is used differently than xy-rem it is the same compound so you would not be allowed to dive if you were on xyrem in many countries.

At the end of the day it has to be a deci-sion taken by the individual and the dive school. They will have to test how you re-spond to excitement, emotions and stressful situations.

If you decide to dive and can find a school that will take you the number one advice we had was to use a full face mask to decrease the risk of drowning in case of either cataplexy or EDS during diving.

While it is important to know that someone with narcolepsy can do almost anything there are times when the almost needs stressing.

There is little doubt if someone with narcolepsy wanted to dive they could find a school in Egypt, South America or Asia that would take them with few questions asked.

We do wonder if it’s worth the risk not just to you but to your dive buddy and instructor.